Online auction aims to make big difference for disabled Arundel twin babies
Beverly Cerexhe-Dickens, founder of the Chichester Big Band, is offering an important fund-raiser at her next concert, the Gatsby Gala bringing together with the Chichester Big Band and the Regis Jazz Band on Saturday, October 25.
It’s all happening at the Jubilee Hall in Oving with tickets available on ticketsource under Chichester Big Band.
At the event there will be online auction to raise money for Beverly’s twin baby granddaughters Hallie and Primrose, born to Tillie and Craig in June 2024 and living Arundel.
As Beverly says: “They were born ten weeks early with Apert Syndrome, which presents with deformities of the head, hands and feet and many other serious medical problems. In their very short lives, they have both endured many surgeries, but still they smile.
“They spent the first seven months of their lives in hospital with numerous ongoing medical issues, whilst on a ventilator. They couldn't be cuddled for a long time, which was very upsetting for their parents. It has been devastating and heartbreaking for their parents and us their family.
“Hallie now has a tracheostomy and makes no sound and is fed through a feeding tube. Primrose has two medical conditions that are a threat to life if not treated and monitored correctly. She has to take medication daily to control pain because her body does not produce the hormone to do this, and she has a shunt to her brain to drain excess fluid into her stomach. These issues will affect Primrose for her entire life.
“The family car is extremely inadequate in size for them given the amount of medical equipment they have to carry around with them at all times including emergency equipment.
“Whilst both babies are registered disabled, they cannot have a mobility car until they are three, and then it will still not be large enough. My daughter, their mummy Tillie, feels trapped because it is so difficult to go out. Hallie has a carer and this also takes up extra room in the car. This is taking its toll on my daughter’s mental health. She has good days and bad days, but every day, they are amazing parents and are doing an incredible job, given all the hospital appointments the girls have to go to, some of which involve a 5am start in the mornings.
“I am looking to raise funds to go towards the purchase of a large vehicle for the family to be able to go about their daily lives and perhaps take a trip away in the UK, as at the moment, this is impossible. Finance for them is not possible because they do not know daily what is going to happen with the girls. Emergency hospital admissions are frequent. Further surgeries are imminent for both babies.”
Fund-raising is on https://www.justgiving.com/crowdfunding/beverly-cerexhe-dickens?utm_medium=FA&utm_source=CL
“I am looking to raise enough funds – they'll put some savings to it – to purchase a used people carrier/van with a very large boot for medical equipment etc. In spite of all the above, the babies are thriving and developing albeit a little behind and we are delighted with their progress. As a concerned mother to Tillie, I'm just trying to help my baby look after her babies!”